Two and a half hours ago Conor suffered his 3rd Tonic Clonic or Grand Mal seizure. (A Year ago he also suffered an episode of rhabdomyolisis, a serious adverse reaction to his previous seizure medication). On the previous 2 seizures Conor was in a room by himself when they started, this time he was with me in the living room after we had returned, together with his mother, from a trip to the Superstore. I sat down in a chair in the living room and Conor came in and fell backwards like a tree falling in the woods. Fortunately he fell into a soft, well cushioned chair and did not hit his head on anything hard or sharp. I thought at first he was joking but then I saw that the cheese which he had sought out at the Superstore had been flung across the room. I noticed then things were not right.
His mom was home and together we moved him to the floor on his side with a soft pillow under his head. When he spewed up fluid it went on to the pillow and a rolled up blanket we had also put under his head. His body went into convulsions and he was unconscious for a period of 3-4 minutes. We called 911 and they sent the emergency response team (thank you again 911 and EMT responders) and they measured his body temperature, took his blood pressure and heart beat and observed him for a period of time before agreeing that he could stay home wihout an emergency room visit this time. They gave us signs of things to look for and be concerned about. Conor has recovered more quickly this time than on previous occasions and he has been bouncing off the floor as always (and playing on Dad's computer).
Seizures are more common in persons with autism than in the general population and even more common if the autistic person, like my son, also suffers from an intellectual disability. This is stuff you don't hear often from those persons, high functioning autistics or their family members, who fight against the rights of people like my son to have a cure, who fight to prevent research into causes and treatments of autism and other neurological disorders including seizure disorders.
To those people I say you have no right to fight against cure oriented research. If you are fortunate enough that your alleged autism is not a disorder from which you suffer, enjoy your business successes and your literary and lecturing careers and stop oppressing my son and others like him who actually suffer from autism disorders and the other cognitive, neurological and other disorders that so often accompany them.
I am tired of listening to your complaining while my son suffers.
For those who suffer from autism and seizures or those who care for them the US NIH, through its MedlinePlus service provides the following information about tonic clonic seizures:
Generalized tonic-clonic seizure
Generalized tonic-clonic seizures may occur in people of any age. They can occur once (single episode). Or they can occur as part of a repeated, chronic illness (epilepsy). Some seizures are due to psychological problems (psychogenic).
Many persons with generalized tonic-clonic seizures have vision, taste, smell, or sensory changes, hallucinations, or dizziness before the seizure. This is called an aura.
The seizures usually result in rigid muscles. This is followed by violent muscle contractions andloss of alertness (consciousness). Other symptoms that occur during the seizure may include:
- Biting the cheek or tongue
- Clenched teeth or jaw
- Loss of urine or stool control (incontinence)
- Stopped breathing or difficulty breathing
- Blue skin color
After the seizure, the person may have:
- Drowsiness or sleepiness that lasts for 1 hour or longer
- Loss of memory (amnesia) about the seizure episode
- Weakness of one side of the body for a few minutes to a few hours following seizure (called Todd paralysis)
Exams and Tests
The doctor will perform a physical exam. This will include a detailed look at the brain and nervous system.
An EEG (electroencephalogram) will be done to check the electrical activity in the brain. People with seizures often have abnormal electrical activity seen on this test. In some cases, the test shows the area in the brain where the seizures start. The brain may appear normal after a seizure or between seizures.
Blood tests may also be ordered to check for other health problems that may be causing the seizures.
Treatment for tonic-clonic seizures includes medications, changes in lifestyle for adults andchildren, such as activity and diet, and sometimes surgery. Your doctor can tell you more about these options.
Seizure - tonic-clonic; Seizure - grand mal; Grand mal seizure; Seizure - generalized
I'm sorry to hear about Conor's seizure.Glad he recovered so quickly.The last time I had a severe seizure,I was out in public,and somebody caught me before I fell into the street,and called for an ambulance.
While it's been nine months since I had this last severe seizure,I have had a lot more medical crap since.I have finally been able to get a complete diagnosis.After putting all my tests from the last five years ogether,including some I had in early May,we have figured out I have a fairly rare and new type of mitochondrial disease unique to autism.
I really do not understand the Ari Ne'emans and John Elder Robinsons of this world.Are they willfully ignorant and have no have no clue,or are they so self centered that they want to present their type of autism as the only acceptable one for society?
The good news is those doing the research do not listen to neurodiversity,and research does go on.That's why I have this diagnosis today.
As much as you have hundreds of followers on line. In situations like this you are alone.
I'm glad Conor is doing better but his future is scary at best.
I hope that change happens soon.
I'm sorry to hear the news about Conor. I hope he's okay. I agree that members of the ND movement should not trivialize autism. I question whether they are truly autistic if they are not disabled by their autism.
I hope this is an isolated seizure for Conor. My son-who also has classical autism-started to have seizures as a teenager also. Thankfully, he can take Lamictal without the rash reaction (so far). However, he does have breakthrough seizures at times and his dosage has increased. Around the time he turned 18, he had several unstable months. We're not sure if hormones, stress, etc contributed as he is non-verbal and can't tell us what was different then. You also have to weigh whether or not to increase meds or wait it out as high levels have their own drawbacks and it is near impossible to reduce after you raise. Right now, they have been controlled for about six months. Very grateful, but I always feel vigilant and wonder about sub-clinical activity when he is agitated or tired.
As always, I agree that the neurodiversity crowd cannot speak for my son at all and they aren't here to help in a practical way either. I'm always glad when someone is able to function, but it is a disservice to imply that it is easy to escape the form of autism that our relatives have.
In any case, Best wishes for Conor and your family.
I am so sorry to hear about Conor suffering another seizure. It is good to hear that he has recovered and did not have to go to the hospital. I would like to ask if I could post a link on my blog for this story. I think it is so important that people see that there is so many frightening and very real sides of autism that just do not get enough media attention, why, I do not know. Thank you! Wishing you all the best and Conor well! Best regards, Heather
MTGI feel free to post a link if you wish, I think it is important for people, parents in particular, to know some of the realities that sometimes accompany an autism disorder. They aren't likely to be aware of those possibilities from listening to mainstream media.
Thank you so much for letting me post the link. I will have it on my blog shortly. All the best, Heather
3-4 minutes! That's a long time - my guy's been having seizures since he participated in the Risperdol pediatric protocols... but his haven't gone as long as two minutes. Meanwhile, he's been on so many different AEDs, at ever-increasing doses - which have a net effect of doping him up and significant weight gain. I feel the medications are as problematic as the seizures! I've never been able to get a direct answer when I ask what would happen if we stopped the meds...
AMEN! My son is 14 and MUCH the same as Conor. Stephen had his first seizure about 2 months ago.
I, too, am SO TIRED of the media making out like autism is just a "quirky" thing. It's hellish and I want my son to get better. I'm sick of people acting like we're the bad guys if we don't spew the "I don't want my child to be 'CURED'" claptrap.
My son is not potty trained, is obese from the Risperdal, and displays SIBs. It is often hell on earth to get through a day.
Know you're not alone Harold. Same thing with my child. Tonic Clonic seizures with severe autism. Terrifying and heartbreaking for a parent to watch. Glad that Conor is doing better now. The most terrifying part is not knowing when they will happen. My child's seizures just happen out of the blue like this too. No warning at all. It is a very scary and stressful state way to live, always being on guard.
Will they increase his meds with this breakthrough seizure? Did he actually seize for 3-4 minutes? How long before he comes out of the post ictal state (if you don't mind me asking).
The ND crowd is simply sickening. I think the worst offenders are the parents of high functioning kids writing blog after blog of how great and quirky and fun their "Auties" are (Jean W from the blog Stimeyland has to be the worst). Sorry but these parents are just complete ASSHOLES because they have no idea what autism really is IMO.
Anonymous re the ND crowd: I share your ("frustration" isn't strong enough...) re this crew, but can't call them names: they do, after all, have a diagnosis.
The problem lies in the APA, who are telling people "what autism really is" and shafting everyone in the process, with the smiling support of shrinks, gov'ts, Agencies, Schools... and the NDs.
My son started getting seizures in July 2012, the week before his 12th birthday. They became more severe and more frequent, and by the end of the year he was getting a seizure a week.
In mid 2013 we started giving him sea salt and methylation supplements (B12, methyl folate, TMG, B6/P5P, choline) and Enhansa, a powerful anti-inflammatory/anti-oxidant.
Almost immediately, his behavior and mood improved. The seizures became less frequent and less severe. His last seizure was in November 2013 and his functioning continues to improve. to read more about methylation, see http://mthfr.net/
Best wishes to you and Conor
True. People should know and should aware of convulsions in children. Thanks for sharing.
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